I'm 45 and recently been diagnosed with stage 3 CKD.I am absolutely scared out of my wits I can't eat because I feel sick with worry.
When I have searched it online it just keeps coming up with how it's going to eventually kill me.
I'm so scared I can't stop crying, I just keep thinking about my children they are only young.
I am so sorry that you are feeling so frightened. Did your physician give you any suggestions? Do you know the actual cause of your CKD?
No, I've got an appointment with kidney Dr in January. I have high blood pressure and I think they said it's a chicken and egg scinario as to what came first.
I am a 66 to woman. I was diagnosed with CKD in 2019. My eGFR was in the low 60s. I became a vegetarian, exercise and follow the principles of the PRAL (predictive renal acid load) diet In July of '24 my eGFR was 88 so it has worked for me. Basically there are some foods that are easier on your kidneys to process than others and those are the foods you should eat more of. Just sensible eating really, with a few tweaks.
Research the PRAL diet and information about CKD so you are more knowledgeable about it . A kidney dietician could also offer advice. Regular exercise should also be incorporated into your routine.
It's hard when you are 1st diagnosed, but just take it once day at a time and you'll be ok.
Thank you x
Not sure what has caused your kidney decline...but still alot you can do at Stage 3 to help slow your decline..I was about your age when I was dx with Stage 3...it took over 20 years to reach Dialysis...I do Peritoneal Dialysis at home while I sleep and most days I forget I am in kidney failure...Its okay to work through your grief but the sooner you start to research about which foods are good and which foods are bad the better...for now do not take any Aspirin products...do not drink Cola Drinks and watch your Salt intake...There are treatments for kidney disease and there is also transplant...its not the Death Sentence that you are reading about on the Internet...dont do that to yourself and try to keep your stress levels under control..and keep us posted ..we will try to help guide you as most of us are Kidney Disease Survivors !
Thank you so much, that was very helpful x
What a reassuring answer.
Hello Missyell,I understand your concern as I have stage 3CKD too. But don't worry too much!!
I've had CKD stage 3 for ten years now and all is well. I watch my salt and sugar intake, and blood pressure, but eat pretty much what I want.
There are some markers you will want to keep an eye on with your doctor like Creatinine and GFR ( filtration rate ). These are easily measured with a blood test. Try to have a test every 4 months or less if your kidney doctor request them and follow his/her recommendations.
Missyell, it's very important to learn to relax and not worry as this will only add unnecessary suffering and make your life a burden. With the proper diet and nutrition you will live a long and productive life and enjoy your children.
Worry is a very difficult human emotion to control, but it is possible to lessen it.
Try to live more and more in the present which is ever beautiful and which really stretches far beyond the limits of the past and the future. If at all you want to worry, let your only worry be how to stop worring!
As humans we worry too one degree or another, but worry can be removed over time with care and practice.
Keep me updated on your progress.
Happy Holiday's 💐
Wishing you all the best,
David
that was a really nice post. I too was just diagnosed with stage 3a and was feeling like Missy. I have good and bad days. I have a wonderful husband and 7 year old son. My nephrologist told me my gas tank is half full and I’m 46 years old. So I’d say that’s a good thing.👍 I’m supposed to decide whether or not to do a biopsy by my next appointment. I decided not to.
I understand you. I am so sorry for this fear you are going through. I found out at age 36 I was in Stage 3 at 45% with the GFR. I live in the US. I immediately got in contact with the NKF of Greater NY. I was extremely fortunate to have bonded with them as their support is why I am here at age 49 +10, 10 yrs into my Kidney Transplant. I would suggest you get in touch if you have a foundation like this National Kidney Foundation in England. Their information and support is priceless. I was able to call them from 90 minutes away at any time. I would call the Nurse they had back then from the produce ailse any time i had a question. See where I live in the US what saved me was getting so proactive immediately. I was given 5 to 10 yrs before dialysis and made it to 10 years before I began it in 2011. I did so with the information from NKF more so from the Doctors. Yet i combined them. I did the walk for NYC in 2002 and from asking for sponsors in my area I ran into someone from my doctors office who happened to be connected to a Dialysis Center though I did not know and the nutritionist walked out a the same time I did. I kept asking anyone and everyon I would keep talking about my senario and suddenly after having the wrong regular nutritionists to 2 yrs I was referred to a Renal Nutritionist the only one in my area. The Renal Nutritionist called my Doctor got the instructions of my restriected water intake reduced sodium, phosphorus calcium and protein. She was able to bring my creatinine down from 2.1 to 1.7 in 6 weeks. Now in my case, I was misdiagnosed and the meds blew out my kidneys at age 22 and I did not konw until it suddenly sprung up on me at age 36 my first semester at Rutgesr University. I never had to diet in my life and I have no family I raised myself so if I can learn to diet anyone can. I was always in great shape but I blew up from a size 16 to a 24 in 5 weeks! All fluid. So it was someone giving me the 800 number to the National KIdney Foundation for Greater NY. that saved my life. I was 36 and met became very close with their Program Director who was 54 and today is 74 and today I just received her Christmas Card. The relationships I came across with thsi beautiful organization is priceless as I spoke to them by phone for 20 yrs now. My transslpnat creatinine climbed this year and the kidney is now on its first steps to decline. I for many reasons along with facing a life threatening illness developed PTSD 5 yrs after my diagnosis as I was running for my life in that fear. Yet fear is a motivator and a life saver. For myself it all came down to diet and exercise. That fear is not like any other you have experienced. I understand you completely. Yet we all have our own individual health and it is extremely important you consult in England Englands way of a Kidney Foundation Support and find a Nephrologist. Work with both. The most important thing for myself was the Lab Logs from Amgen who donated them to the National Kidney foundation here. It gave you descriptions of each item mentioned in your lab report. I went to LPN school 6 yrs before my diagnosis at 28 and only made it half way through then stopped. However it helped me learn the labs. I collected all my records from each of my doctors immediately when i found out. Back in 2002 they kept the records (my General Practictioner) for 7 years today they only do it for 2. Yet that is just myself. I gave mea sense of control. See the amgen lab logs I copied my labs onto its page and it had room for 3 labs next toeach other and you can see your progress. I was able to match my blood tests against my diet and was able to keep my creatinine the same wiht my Renal Nutritionist for 3 years. I would eat the same thing she taught me with that menue she gave and I would follow it daily and eat the same thing for 6 years. I was restricted to 4 oz of meat per day so if I had an egg in the morning I would have pasta at nightI had a one page menu that is still on mybulletin board to this day. See I travelled up to NYC sick as hell by train one day and they sent me home with all this informatoin then i would call and they would send it to me instantly. I learned. That worked for me. I also took a job at a convenience store as an Asst Mgr intentionally to get my muscles in shape for dialysis. But wiht your kids yo ucan do that at home simply. I am single that worked for me. I was told you will learn your own way. I was advised what to expect and that my reactions were normal. Having someone who understood was my sole support. There is too much to discuss at this moment i won't go into because you just found out and you need to process. You will continue too process throughout. I had a visual as I started through this pure endless hell as no one can stop your fear as it is real. For myself I had this vision insantly that said Finish line on a path on the side of a mountain with the sun shining through on the left as the white with black letter long cloth sign waved in the breeze far ahead. It was held by 2 wooden thick poles like faded trees. I simply said, "Pace, Pace Pace." But that took a long while before that came. You will gain control your own way. Yet a support system is key. Kidney information is powerful as you must be proactive in your own care. You have other priorities but to be there for them you must put yourself first. A doctor and whatever Foudations are in your area in England are the utmost important. They have access to websites to phones to the ability to meet in person. They can guide you and have all the things necessary to learn your own way. For myself education calms me down. You do not need a college degree to do this. It took me 10 yrs to get my AA and BA and I got sick my first semester. I graduated onmy 40th birthady and then into End Stage. Yet I learned from NKF what my doctors her do not tell you that I could get on a wait list for a Transplant at 20%. By law the docs can only tell you at 15%. The Foundations where I live in the US can provide what no others can. Yet that is also with my doctors. It helps them help you. My doctor didn't like I knew so much early but I am here for it. switched him at the last minute anyway. All that was told to me came true and is still true about how you get through this. Its the experience with it. Your journey is your own but you are not alone. Everyone has their own diangoses so its first and foremost important You follow what your doctor tells you. Yet know that in the States at least in 2011 the National Kidney Foundation had a symposium with the American Heart Association and American Diabetes Association and they all collaborated and brought current information. So that diet and the doctors advice all depends on those needs. Yet diet and exercise is the most powerful asset for your body to get through. I knew instantly i wanted a transplant. I had to fight hard for it. Who got me through is who I met along the way who was an ally. ....
Thank you so much x
Re "When I have searched it online....", I suggest you;re viewing the wrong sites which is understandable. You could try the reputable one Ive linked below which includes the comment "with treatment and healthy life changes, many people in Stage 3 do not move to Stage 4 or Stage 5, which is kidney failure". They key is "treatment and healthy life changes".
My mum has been stage 3 for 14y including almost 8 with just 1 kidney. For most of that time, she has adopted a Nutritional Therapy protocol rather than a renal diet, which may be more restrictive for general health.
Bjr mon mari est au stade 3b ,il prend des médicaments pour la tension et forxiga, son état est stable, il faut suivre un régime sans sel..Ne vous inquiétez pas on meurt pas d insuffisance rénale.Il y a des solutions ,si vraiment ça ca grave la dyalise, et aussi la greffe d un rein,Soyez optimiste, tout ira bien
Try no to worry too much. Stress itself is a killer. Give yourself a week more to freak out and process if you need to and then... Start a kidney friendly diet. Start to ween yourself off most processed foods and high sodium foods. Less red meat and more fish, fruit and veggies. Try to cook with minimal salt/sodium or not at all and just sprinkle a bit at the table if needed. Play with spices and herbs. Ask for less sodium when you eat out. Limit alcohol.
Exercise regularly. Maintain a healthy weight. Take care of your mental health. Stress is your enemy. Perhaps start therapy or join a kidney group. This online forum is a great start. Get labs yearly or as often as your nephrologist suggests.
That being said, you can stay at stage 3a for a really, really long time and not get worse. So try to do what you can but still enjoy yourself. The occasional "non kidney friendly meal, day, celebration, or vacation" is perfectly fine, too.
God luck. Happy Holiday Season.
Thank you so much x I really appreciate it
Missyell...with regard to diet, simply take a look at your labs and see what is "out of range". That will determine what you need to focus on for yourself. CKD is a very generalized term for any number of underlying conditions that produce kidney issues. It's like saying "I have cancer or I have a skin condition." CKD can be caused by polycystic disease, high blood pressure, diabetes, autoimmune conditions, meds, infections, stones, etc. It's exceptionally important to find the cause because this will set you on a great path to halt or slow progression - this often involves meds, diet modifications tailored to your needs, and more. In the meantime, eating fresh fruits and veggies and white meats, while staying away from processed (often boxed) goods is always good. Europeans often have an awareness of healthy living so that's good! In short, the more certain you can be regarding your underlying situation, the more in control you be will be. Then, it's important to establish regular follow-up appointments and labs (quarterly is often recommended) so you can stay on top of it. Many go decades without needing dialysis or a transplant, other may not. Just know that, as time goes on, science also moves forward. I'm certain new treatments and processes will be available soon - within a decade. If you find that your stress levels is beyond your control, please bring that up with your doctor too. They've heard everything so don't worry about not being understood. I sought help after my husband was given his diagnosis (7 years to live if he didn't change his ways). I had a hard time sleeping and more. He was very understanding and offered me a mild sleep aid and pointed out a few therapists to consider. Oddly, simply talking to the man was very reassuring in itself. So that alone turned my situation around, no meds or therapist needed. I'm sure you, too, will be heard. Trust me. Sending lots of positivity your way. It's dark for you right now, but the sun will shine again.
Thank you your thoughts echo mine!! I am in pretty much same “ boat”
Continued from last post... its a fight from this moment on for your life. You are worth it. The scariest thing is to make those calls. I called the transplant centers on my own. Where I live its important. So I wasn't bound by any dialysis center they are corporations. I went to a class instnatly at a dialysis center after learning from NKF so much info on my own I went there and they had a class for dialysis. But everyone there just found out about their condition the week before and one was a night nurse was told the year before but it wasn't emphasized adn then found out in her condition. I was 10 yrs ahead. I had walked into a Dialysis Center after informed of a national one that was real close to me and introduced myself in 2004 to their nurse. We were so so close. She was the reason I have my transplant. I just found out she passed away 2 yrs after my transplant. She had cancer the whole time taking care of patients. You will find great people and you will find nightmares. Just stick with a support system. I didnt' have one. I faked my way through and the got the tranplant on my own and did it on my own. I will talk about that another time. You need to absorb where you are at. Yet learn from your research which you want. Dialysis or Transplant Transplant i knew instantly and I knew instantly I wanted to do PD dialysis. Your gut will follow your life situation and your body. That you need to take the time to learn.when you are ready. I chose to do it immediately at stage 3 and made to 10 yrs before dialysis given the 5 to 10 range. So you go with what is right for your body, with your doctors and with your foundations and i would suggest finding the correct nutritiionist for you, a renal one to work with your doctors.so they can guide you. Again I am in the US. I am unfamilar with the UK's set up. Yet coming here was your first major step to be heard and find the supportive people you are looking for to discuss this with. I hope you find it helpful. I am so sorry you have to experience such a horror. I am 59 now. 49 +10. I know I will get another kidney as I cannot think otherwise. Denial I forever will be in with that because I will fight like hell. I have been calm for along whle as well after the transplant. Well things come with it but it still is the best modality. A transplant is not a cure its a modality but is the best one. I have a deceased donor and I understand they can last longer up to many years. So can a living donor. Its one stage at a time, one step at time. one breath at a time. And please make sure to often take in slow deep breaths. The shock is normal and everything you experience from here out is normal. It is your new normal and there will be lifestyle changes. You will learn and you will adapt. Fear is not just a motivator is a powerful strength. I wish I could get you through that awful feeling. Yet I can hear you, undestand you and stand by you. So will many. You have entered a population you otherwise never would have come across. A kidney population. It will bring you much support along your journey. Is there a Kidney Organization near you? I travelled up to NYC and that one trip in the very beginning was worth eerything. That was 2004 I found out in 2002. In 2009 I took my trip to another state to get on a transplant list i ended up on the list as well with one an hour from me and that is where I Got my transpant. I was on dialysis in 2012 and got my Transplant Sept 8 2014. I was 36 but by then 47 on dialysis and 49 when I got my transplant. At 36 my cousin told me my body was young enough to compensate. So is 43. I folllow what is here in the United States. You need to follow what is there in England as to what your needs are as I am unsure diet wise and what organizations are out there. Its important you are here. Yet know each region has their own nutrition and heath guidelines. Yet once you explore and learn you will automatically find you can parallel and use the tools necessary that fit you. Here this wonderful website is universal. We can communicate together and be there for each other. That is powerful. A friend of mine sent me a card that said I was going to be okay. The card read she knew because she knew me. I still have that on my desk. Its the most beautiful supportive card. It reassured me of strenght in that moment. The fear continued throughout but it didn't stop me it simply was there bugging me in my way but it kept me fighting all the way through. What it is you need for you, however you express, however your temperment, how ever you process you do just that. You apply your own to how you choose to approach all this. Its a process and life style changes already began. You are here and that is a great sign and first step. Express hear all you want. Say and as well don't say whatever you want. You may have limitations with wanting to protect your kids but maybe you will learn ways from others in your situation you may come across as to how incorporate all this. This is very overwhelming news to try to comprehend. You must do whatever is right for you in order to go through all of this. You must always know its absolutely right and of course absolutely okay. It is my own opinion, with your ingenuity to find this website, you are already going to be okay. Okay in that you will find whatever way to get through to meet your needs to which ever dialysis or transplant is the right treatment for you. This is also a great supportive website to vent and express all your emotions. I understand you. I definitely hear you. You must find first to help you the most to manage your fear, your correct nutrition so it can help you sleep as well. Your doctors and what ever correct nutritionist you can find. For example if you are eating to much protein, sodium, calcium and phosphorus, etc maybe its causing nausea and other syptoms. Along with medication knowing what to eat and that yes you can eat and must eat at the level you are at right now as its more so you can learn to adapt but that will keep your body balanced and that will your kidney maintain. So to find any kind of relief you must get that information your doctor and ask them questions and if they don't answer you you keep going in England until the right persons for your body to tell you. I can only tell you what I did inthe US. I went to NKF changed my multiple times until I learned and got the right nutritionst a kidney one and that made all the difference alnog with the mediations. I was so sick inthe beginning of my first semester at Rutgers I blew up 38 lbs in 5 weeks and vomited every day for 3 yrs had 38 specialists before I found out itwas kidney failure and was in and out ofh physical theratpy for 3 yrs as it was ll fluid I had to lose. I withdrew my first semestr of Rutgers yet that wwas my life's dream and i came back and never withdrew again I was on a back brace and knee brace and sick as hell nothing stopped me but it did save me. I learned.
I learned to find a Kidney Foundation. I hope there is one in the UK I really do. I reread your message above as I accidentally deleted what I wrote here as I accidentally posted it under the wrong reply and I erred. Yet I see you are reading online about your condition. I think research is great. Yet right now with this shocking news you have and the shock you are in a as we all are when we first hear this and as we go through this, you really need to find out from your doctor what exactly Stage 3 means for you. You need to find out from him with your health conditions are and how much time does it mean you have before you get to Stage 5 and begin dialysis. Get an estimated time of years or sooner. Then apply what is right for you with your conditions. For example if you have diabetes or heart go to each of those foundations with the kidney one and ask what type of dietician you need. Ask the doctor directly what to expect right from where you are at. Online will give you overall but a doctor can give you an estimate of time which right now you need to procsss this first. The beginning is dealing with the fear. Not online's quick conclusion. You may not die. You may get a modality which is a treatment that is right for your condition and adapt to a new lifestyle and live a long time once its learned. So yes there is the inevitable but there is fighting it off for Time. I really would listen to your kidney specialist for exactly how much time you have left from where you are at right now before you get to dialysis, first. Then you take a breath. Once you do you have time to breathe , then you are ready take time to plan ahead to fight this. That is my opinion. Its so overwhelming to go through this. I am sorry you have to. Yet I am very fortunate to have come across your post as I get HealthUnlocked in my emails. I will be checking in on your post and I really care about how scared you are and all you are going through. You have my very best wishes and my support. 🤗
Sincerely,
EYatNKFSvdMYLIF
Wow I can't thank you enough x
You are most welcome.
Hi Missyell, First don’t panic breathe slowly. Write down your questions for your Drs visit. You are at home with family right. My diagnosis came to me during a quick health check for my work country permit. My blood pressure was really high, I was going to the bathroom at night a lot, I drink a lot of water. Good healthy weight, active walk a lot, etc. i had a really good diet, no meat, avacados, bananas, Oat meal, salads, fish etc. I started having back pains on the left so I thought it was my heart. At my Drs appointment I was rushed to ICU… I was in sepsis. I Was in the hospital for 8 weeks, turns out I have an autoimmune decease. This attacked my kidney, of which the high blood pressure was due to the dirty blood. They performed a biopsy to check the damage, I was put on 3 months of convalescence. This was 14 months ago. Now my meds are 500mg per day, all reduced. I am back working in another country, blood work every three months, ..my new thing is horseback riding. I tell you my story because if the drs let you go home then you are not as bad as you think. Watch your potassium, I have removed it from my diet no avacados, bananas, coconut, mangos, patatoes. etc. Low salt and sugars. Once again Breathe, pray for a good team of Doc’s, laugh as much as possible. Most of all educate yourself…. Get fresh air, and rest.
All the best to you❤️
Thank you so much for sharing your story x
Dear Missyell THANK YOU for your asking because the replies and info given by this group has been anxiety reducing for me and I hope helpful to you…I have been on a roller coaster of anxiety for a while due to stage 3 and heart surgery… but the ride is getting less bumpy.. I have started to look at big picture and not panic at every small change in my labs .. I have learned how dehydration affects labs and too much exercise can too ! I wish my M D had told me this sooner.. I now suspect after reading all the replies that stress affects labs too!!
I like the advice from one person to take one week to “stress” and then start your homework of protecting your kidneys and finding good source of medical info and care..God Bless
I think fear is a natural reaction to kidney disease no matter the cause. Give yourself time and follow a good diet and exercise. I found out in my late 60s that I have polycystic kidneys. I had no idea although I had had hematuria all my life. I am stage 3 also. Some days are easier than others, but stay positive. Don’t forget prayer.
Missyell,
it does not have to be scary. there are many things you can do to dramatically slow it down. I have been living with ckd for 20 years.
it's starts with diet, on this site they have special diet youcan follow. also its very important to drink the right amount of water. stay away from red meat. I checked the impact of eating red meat on my creatinine and it led me to avoid red meat. eat fish chicken vegetables exercise regularly. there are other things you can do just read more about it. if you have high blood pressure bring it under control.
Hopefully this gives you some comfort.
also minimize your alcohol intake.
Missyell slow down take a deep breath don't panic .I was diagnosed with Tage 3 kidney disease in 2021 after I was hospitalized for covid. Your at a point where you can be treated and may not progress for a significant amount of time talk to a nephrolosgist and be guided by what they tell you for treatment. I have since progressed to end stage renal disease and am currently doing dialysis at home 4 days a week . I'm going to be very honest yes this disease can take your life but also with the correct t treatment whether it is dialysis or a kidney transplant you can very well have another 20 or 30 Years left of your life .take it day by day I was just like you when I first found out it definately will change your life but you can still have a good life with kidney disease. I have made many changes to my way of life but I also cherish every day keep a positive attitude and just know kidney disease is NOT A DEFINATE DEARH SENTENCE. DONT GIVE UP THE FIGHT. Live each day to the fullest and keep the faith if you believe in God rely on him to see you through pray to God it will bring comfort and help to get you through this also lean on a good friend or family member for support talk about how you feel with someone who will listen and understand. I have my daughter by my side overstep of this journey she is my rock and takes a big difference to have that support . I'll pray for too but remember these word YOU CAN DO THIS .AS MY DIYALISIS CENTER MOTTO SAYS THRIVE ON . GOD BLESS YOU IF YOU WANT TO TALK FURTHER PLEASE FEEL FREE TO MESSAGE ME
Thank you x
If your overall health is good, aside from high BP, once your BP is treated, you should be fine.
If you have complicating conditions like proteinuria or diabetes or other kidney issues, it will be harder.
The advice above about avoiding bananas etc. only applies if your potassium levels are flagged as high on your blood test. I panicked too when I was first diagnosed. The panic will go away as you accept the CKD and change some habits and see how slowly CKD actually progresses, if at all. I used the energy of the initial panic to go full on vegan and gave up sugar and sweeteners too, which has made me healthier and skinnier, though diet is quite a personal thing. Be well.
So sorry you are feeling so afraid. Being diagnosed is scary in the beginning. Be an advocated for yourself and your kidney disease. This is a great place for advice and suggestions. We cannot diagnose or prescribe anything. Talk with your nephrologist hopefully you will have a good one if not move on until you find one that listens and helps. I would suggest asking to speak to a renal dietician. Diet is a big deal on this journey. Try not to be afraid and learn all you can, Do not focus on what could be, who knows how long you can maintain stage 3 with diet and exercise and following doctor's orders. Just an fyi I have had kidney disease for 24 years and have been on the transplant list for the last 3. So from stage 3 to now stage 5 it's been a long time. I had to have an av fistula put in my wrist about 6 weeks ago just in case. My egfr is 10. My nephrologist and I have agreed as long as I maintain and continue to feel well which I do we can wait. If I ever had concern I wouldn't hesitate to ask for help. I'm 66 so was 42 when diagnosed and was never referred to a renal dietician just told to watch the salt and not to eat to much meat. I hind out all you can about helping yourself. Take Care
I am 77 years old male. Have stage3, but have had it over 15 years. Only found out I had it about 3 years ago. Tried Jardiance, but that gave me a yeast infection. Had covid back in 2021 and did not take the fake shot. I also have heart failure because my feet swell. Now I have high blood pressure which I didn't have before covid I always heard things get better with age.....cant wait to get there. I follow no certain diet and drink 3 cans of mountain dew a day.
lost all taste for coffee/tea. kidneys are 43 up from 37 6 months ago. Hang in there
Thanks for that. Maybe I should start on the mountain dew 😂
First, stop worrying, l am 69 years old. I was diagnosed at age 30.
Get a good nephrologist that you feel comfortable with .
Also read as much as you can about nutrition for kidney diseases.
You need to know what caused your kidney disease so you can address it
Properly. Your diet and exercise will help slow progression.
Once l found out what hurt my kidneys l knew what not to do and what l could do to help myself along with my doctors instructions.
I went through 6 doctors before l found my current doctor who cares about my well-being. A good doctor and education regarding your health issues is the best way to become strong and live your life. Please don’t worry about dying because we all wish eventually whether you have kidney disease or not. Focus on how you can live your best life.! Get tough and fight it.
My best to you , and your journey
I'm sorry you're freaking out about your diagnosis. I understand that it can be quite a shock. I was diagnosed with Stage 3b about 4yrs ago. eGFR was 49. Thankfully, I found a great nephrologist that i trust, which is very important for not only your healthcare, but your peace of my mind. I always hit Google with any new diagnosis or change in health, so I understand your fears. However, I've learned that it's all to be taken as potential information...it may not always apply to your case. At first I got all the new specialized labs and turned myself into a complete wreck...I looked up what each subset "possibilities" meant in the report, and was firmly convinced of the worst, and that I didn't have long to live. Thankfully my nephro calmed me down quickly and told me that if those potential issues actually applied to me, she would have already told me and started treatment. Anyway, after labs and having my first "real" appt., she immediately discontinued Lisinopril that is been on for years. No aspirin products. Labs diagnosed high potassium levels so I've been on Lokelma (potassium blocker) ever since, and know what foods I have to avoid it severely limit, i.e. potatoes (which I love!), carrots, tomato products, bananas, avocados, etc. I had just convinced myself to eat a banana a day to boost my fruit intake, then was told not to eat them! Potatoes & carrots need to be leached before cooking, and that's more hassle than it's worth, to me. One every few months I have a small baked potato...boy do they taste good, and feel like a real treat! I remember she said "don't intentionally buy an avocado...if there happens to be a little in something you order in a restaurant once in a while, that's ok". So no more purchasing yummy avocados! You'll learn what works for YOUR individual circumstances, and you'll deal with it all. The CKD diagnosis is not a death sentence, as many people have graciously attested to in their nice responses to you. There are always ups & downs to be death with...my eGFR dropped to 22 in less than a year, but slowly over a couple of years it has elevated with all of the changes we've made. Last month it was 42, so medicine & dietary changes DO work if you do your due diligence and help yourself keep on track. Thankfully my nephro & cardiologist work closely with each other so as not to cause harm to one or the other disease if/when changes are made (or not made). My new PCP is on board with the same philosophy. It's important to take control of your health and imperative to be your own strong health advocate. Part of doing so successfully includes trying not to overreact and/or freak out. I'm not a parent, but this may give you an opportunity to help yours learn what it means to receive concerning news and deal with it appropriately and calmly, and help them understand they won't be losing you any time soon, that you care about your body & health, and that they'll be secure in the knowledge & comfort that mom isn't going to die and leave them alone. Personally, I think it's very important how you react to this diagnosis for their sakes...you don't want them to be afraid you're going to die, or afraid to go to the doctor as they may need, and to provide them with the assurance you are not leaving them behind, and that you're a competent & loving mother who will get her act together and be okay! Please try to calm down...I know it's very hard to do...enjoy this blessed holiday season, and look forward to seeing your new nephro and getting more knowledgeable about your diagnosis and how to treat & live well with it. Best of luck to you, sending prayers of comfort & strength, and wishing you a very Merry Christmas.
Wow thank you so much, you have really put things into perspective for me. X
I realize I was a little long-winded, but thought maybe you could glean something from someone else's fairly similar reaction to receiving the CKD diagnosis. When my eGFR dropped to 22 I started imagining going on dialysis and preparing for a transplant, of course getting very upset, but after talking to my nephro with my concerns, she assured me that we were doing the right things, and that we'd need to follow it closely. I saw her and had the special kidney labs every 2 months for a while, and it slowly kept creeping back up. For a couple of years I went in every 4 months once stabilized, and the last visit in October she said she was pleased with everything (even tho it worried me a little to drop to 42 from 46), and we could go 6 months this time! I was so surprised and happy I would have done a backflip leaving the office...however my backflip days are long gone, so I just smiled all the way home, lol. I'm glad that my experiences have helped you put things into a more positive perspective. I'm sure all of the reassurances you've received have all combined to bring a little peace of mind. This is a great support group. I truly hope that you will have a clearer idea now what to possibly expect for your future, and that a weight has been lifted off of your shoulders. Christmas is meant for reflection and celebration, and I hope all of these encouraging messages help allow you to enjoy the reason for the season, and the special times ahead this week for you and your family. When you start getting upset, pause, take a few deep breaths, pray if that's what helps, and remember that you Can handle this diagnosis, you Will handle this diagnosis, and perhaps you'll be a stronger person for it. Internal determination is a big factor in our lives, and I hope you now have that fortitude to face what's been dealt. I thought a CKD diagnosis was the worst thing, but I've since actually had worse, so I've learned to try hard not to freak out. I'm fortunate to have great specialists that I trust, and I have strong faith on which I rely. I will include you in prayer, and I wish you a very blessed and Merry Christmas, with hopes that 2025 will be your best year yet...with or without CKD!
hi missyell i am so sorry ur feeling frightened i have actually had kidney disease since i was one im now in my late teens and still havent been put on dialysis weneer i research abt it freaks me out so dont believe the internet as long as yu take ur meds and have a good diet u will be fine im sure ur children are proud of u
It took doctors 59 years to finally figure out what was wrong with me. (diag Apr 2019). My gfr was 38b, in the ER for the 6th time in 5 years with metabolic acidosis. So they kept me in the hospital to try and find out why. (nearly died each time). Distal Renal Tubular Acidosis Type 1. dRTA1: my kidneys no longer filter toxins from my blood. This is a disease that I was born with, and after a renal gene study July 2023, they learned I have "4" bad kidney genes. 4 from my mom, and 1 from my dad. Explains the unbelievable amount of health problems these bad genes caused to my kidneys. BUT, I'm not diabetic!! (and my mom, 2 sisters and a bro are).
Arthritic conditions, anemia problems (hypochromic-microcytic anemia: my blood cells are abnormally small, and released immaturely to replace dying red blood cells. Thus a body of an 80y/o woman) Fatigue, insomnia, nausea, no energy, no appetite, little appetite. I can sit down to a nice meal, looks great, can't wait to eat it, take one bite and lose my appetite. Sad, and I love flavor. I was born for flavor. I love foreign cuisines! So I lose weight and gain weight as my appetite dictates. Once, I lost 110lbs in 30days. Freaked my doctor out! That was funny to watch.
My Neph doctor put me on 650mg sodium bicarbonate 6 times a day. That's 12. . .white....chalky.....pills. But it helps neutralizing toxins in my blood. Thus reducing the nausea that comes with the toxin build up. My newest disease is gout. When I'm really really sick, I sleep ALOT! Don't or barely eat, and the nausea is like having 3.2 flu 24/7. My kidney function fluctuates without warning, Once 32 and 30 days later it was 58! Made my new pcp happy. Mine is genetic. My mom's mom's uncles (mom's granduncles) all 5 died from nephritis. Her mom lost 4 children 2y and younger to failure to thrive. Those are the ones we know about. She had 12 kids in all. Mental illness affected 3 of them. That's in the disease too. With my sodium bicarb, I take Vits D3, folic acid, magnesium(for heart rythym), potassium(and with great care, too much is bad for kidneys), Vit C, Iron, (plant based-easier to digest). When my dr does a CBC, I check the vitamins and minerals too high or too low and adjust my vitamins accordingly. There are other symptoms. . a lot, with these bad genes. My gfr dropped back to 38b last month. Its gonna kill me one day. So I just eat what I like. I don't do alcohol. Just sweet tea. And then a bottle of pedialyte when I'm feeling dehydrated. Don't drink 'too' much water. My neph says no more than 20oz a day of water. I find a sense of humor helps. I'm a File 13 of all my ancestor's bad genes!!
I was diagnosed at 29, been stage 4 since with eGFR 16-21 consistently…I’m 57 today, still working out, working and watching my kids kick this adulting things ass! It’s about attitude and some small lifestyle adjustments baring a serious kidney issue causing either steady decline of kidney health yearly or suffering an AKI…both are slightly higher risks for those of us with less then perfect kidneys but not insurmountable mountains disease process that a lifestyle and diet adjustment cannot address…if not a continuous and constant decline of function you can nurse sick kidneys into a relatively normal life span…my eGFR was 22 last month, highest it’s been since 1998! My best to you!
Thank you so much x I read the last bit as kick a nurse sideways 😂
lol…old man, small letters and an iPhone…no other outcome but tying snafu! lol!
Hello MissYell. Sorry you are so shocked. Miserable isn't it? Like you, diagnosed Stage 3b before Christmas!! Pretty certain it's daily bone injections or another heart, Rheumatoid, COPD drug!! I spoke to Kidney Care Support..rather sobbed...they we're excellent. Would really Advise you to Call them. Very knowledgeable. You..and i...WIll get through this. Please don't despair. Many people are much worse off yet still help us Newbies...on This Site there are some fabulous new caring people to meet for All conditions, so chin up, smile and welcome New Friends and Adventures. Very Grateful to all Contributors. Happy New Year All xx
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